Understanding diagnostic delays and health outcomes for inflammatory bowel disease: a mixed-methods study of patients’ perspectives

Inflammatory bowel disease (IBD) is a chronic condition affecting the digestive system with symptoms that are often episodic, unpredictable, socially stigmatizing, and impact quality of life. While a timely diagnosis reduces the risk of complications and improves health outcomes, diagnostic delays (DDs) are common. Our study used narratives and data from patient-reported outcome measures (PROMs) of individuals diagnosed with IBD to examine: (1) What factors helped or hindered achieving a timely diagnosis of IBD? and (2) how do DDs relate to PROMs?

We conducted a mixed-methods study of 296 individuals diagnosed with IBD in Canada. The survey included a set of validated measures that assessed depression, fatigue, satisfaction with life, disease severity, and several open-ended questions.

Thematic analysis of open-ended responses revealed five themes that highlighted the ways a diagnosis was delayed or facilitated: symptom ambiguity, fear and denial, patient-provider communication breakdown, misdiagnosis and self-doubt, and self-advocacy. Quantitative findings revealed that a longer time to receive a diagnosis was significantly correlated with higher levels of depression (r = .26) and fatigue (r = .25), reduced satisfaction with life (r =  − .25), and greater disease severity (r =  − .22). We used the data to generate a framework called the Diagnostic Pathways Model to illustrate the diagnostic process of a chronic disease such as IBD.

DDs involve the interacting roles of patient, medical, and communication factors, and a DD can negatively impact a patient’s quality of life. Implications for physician–patient communication and public information are discussed.